The demonstration was completely silent. But it was a powerful silence…a silence that spoke worlds. The children were demonstrating for a communication device to be included in the items to be funded by the government. The reason for the silence? Inability to speak!
730 children suffering from serious illness that prevents them from being able to speak need an augmentative speech device to help them communicate with the people around them. “They re locked in a prison of silence. They think. They feel. But it all remains within. They are unable to communicate with those around them. This device will unlock the door. It’s their right.” says the mother of a little girl with Rett Syndrome.
The device was presented by Ezer Mizion, Isaac Israel and the Health Ministry to the Medicine Package Committee for inclusion. Unfortunately, in spite of the demonstration, it was not accepted.
Of all human faculties, speech is perhaps the most unique. Only humans have the ability to communicate verbally and to use language to express their thoughts and feelings.
Unfortunately, many people are deprived of the gift of speech. They may have lost the ability to speak due to illness or injury, or they may suffer from motor, neurological or cognitive impairments that do not allow them to express themselves verbally.
People with severe speech impairments are locked into their own world. They may hear and understand everything that goes on around them, but they cannot utilize the most basic form of human interaction.
Ezer Mizion’s Voice Output Communication Aids (VOCA) Division offer a high-tech solution to speech impairment, allowing non-speaking people to communicate with the help of electronic devices and computers and, thereby, giving a voice to those who cannot speak. The units are loaned to families in order that they be able to determine which one meets the specific needs of the child. There are many types of VOCA units on the market today. Ideally speaking, the family will then purchase the unit best suited to the patient. However, many units are beyond the budget of the average family already greatly burdened by the myriad of needs of the special child.
Among the parents of the demonstrators was Avigayil Shoshani, whose 14-year-old daughter has Rett Syndrome. “”We knew she was mute when she was just a few months old. Even though she cannot speak, she so desperately wants to make contact with the world. We can’t begin to fathom her frustration at understanding all that goes on within the family, within her neighborhood, to have a comment, an opinion, an objection with no means of communicating her thoughts,” the mother explains her daughter’s predicament.
Currently she tries to communicate with the help of a communication board with pictures and a laptop computer that has special software with communication pictures. “With the help of these systems, she tries to make herself understood and express her feelings. Such joy when she realizes that she has been understood! For example, a few months ago, she learned how to use the picture representing “love” to express her love for us. She also learned how to use the picture representing anger. Until then, she used to bite herself or cry when she felt angry. The smile does not leave her face when she knows we understand her.”
But it is not enough. She has difficulty moving her hands and communicates mainly with her eyes. The computer system presented to the Package Committee is operated by focusing her gaze and that will enable her to communicate more easily.
It’s her world, too. Doesn’t she have the right to be part of it?